*there's his annual check up

Will had a visit with his cardiologist Dr. Johns this week. It included an echo and EKG. He happily watched Toy Story during the echo and was such a big boy during the ekg. He was still as he could be and actually managed it a little better than getting his blood pressure checked. That one had to be done a second time and he got understandably tired of having his arm squeezed. He did protest so much about having the EKG stickers removed that we just left them on awhile. I don't remember them checking his sats. If they did the number must have been fine because he got a great report. The doctor said they can't see or hear anything new or concerning.

The 2 main recurrent points in these appointments are: energy levels and the health of his teeth. The doctor said Will's heart functions close enough to normal that he doesn't expect him to have trouble with his stamina and energy. On the other hand, the structure of the inside of his heart is still different enough that a gum infection could affect the lining of his heart differently and have a larger impact than a gum infection in a person with a typical heart. Will recently had his 2nd visit with the dentist and things look good in that department. Getting a 3 year old to cooperate with brushing his teeth is another story, but we're getting there. 

Our sculpture photo shoot was crowded this year! The bored guys at the valet stand just make this year's pictures special don't you think?

*there's a GREAT report!

Last week Will saw his cardiologist.
The echo was first. He did really well with the help of some good entertainment.

Choosing his next show on the Ipad.

The sonographer pointed to the Ipad when we were done and said "That was a miracle".

Next was length, weight, and EKG. I couldn't get pictures of that because Will needed all of my attention. He tends to cry about having to lie down to get weighed. Luckily he is getting big enough that most offices let him stand on the big kid scale.

He cried a lot through the EKG. I think having 15 leads stuck to your chest is scary. Luckily it is quick, doesn't really hurt, but just looks odd. I wish I had a picture for him to look at in the future. That way he can see that he has survived them before.

Here is another tough heart kid getting his EKG at Vanderbilt:

While Will struggled through his EKG (imagine the above but with a lot of squirming) his foot caught some of the wires and he pulled half the leads off all at once. That made it last about 2 minutes instead of 1.

Then we waited for a long time while the doctor looked over all of the results. An hour and a half into the appointment Will looked down at his chest, then at me and said "Oh shurt!". Translation: I just realized I haven't been wearing a shirt all this time. What is going on??

The report from Dr. Johns. "I couldn't be happier with what I saw". Will's echo is unchanged from the last one. His narrow pulmonary artery (see PA stenosis below) has not had any additional narrowing. This is the major thing we will be watching for Will's entire life. I refer to it as "his valve". His is one of the better TOF pulmonary arteries out there, but it could give out at some point because it works harder than the valves of most of us. They also continue to watch the hole that was closed between 2 of the heart chambers (called a VSD - ventricular septal defect). When they patched it a tiny gap remained on one side. Just something to watch.

At every appointment I learn something new. New thing #1 was about Will's activity level. It started with the usual question about us seeing any color changes. My answer is always the same: He occasionally turns blue around the mouth, hands, and feet when he gets cold. Usually at the end of a bath. They nod and confirm that is normal for TOF. They also ask about his activity level.

Is he as active as he always was?

Can he keep up with other kids?

Do you have any concerns about how much energy he has?

I always say his activity level is really good. This time I asked if a change in that department will be a sign that his heart function is deteriorating. The answer was no, they just ask about it to get a sense of who he is.

That is unnerving to me. I prefer symptoms. Symptoms are an outward sign that something needs help. I like the echo and ekg tests to confirm that his heart is as good as it can be...but I really prefer symptoms as a warning first. Now maybe it is clear why this appointment is such a big deal in our lives. We never know if we are going to get surprised with bad news.

This leads me to the MRI. I learned from other heart moms that MRIs can give the most accurate view of heart structure.

photo courtesy of How Stuff Works

Dr. Johns says Will's MRIs will start around ages 10-12 and he will get them every few years after that. They require sedation so they don't do them often unless they have a reason. Since there are no other signs that tell them to look harder at Will's heart right now it can wait. I am fine with waiting but that will probably be a nerve wracking day. Note to self: find a video of someone getting an MRI to show Will before his first one.

New thing #2: Dr. Johns said Will will probably have some sort of pain in his chest in the future. He said that their office has 15-20 teens come in per week with non-dangerous chest pain. This is due to the chest wall being cut during open heart surgery... once it's been cut it is affected forever. It is just going to produce some kind of pain at various times.

Lastly, the doctor said he would be "amazed" if Will needed any more repairs in the next 10 years. And he "probably" won't need anything fixed in the next 10-20 years "if ever". Great news!

Other fun facts about the 2012 cardiology appointment:

He didn't have to have an Xray!

His pulse ox was 99!

If the appointment in 2013 goes this well Dr. Johns says he may recommend that Will not return for 18 months or even 2 years!

More photos to come!

*there's a great check up

Today we went to see Will's cardiologist. Possibly the easiest appointment with a doctor yet. And we left with the best news. We've been waiting to hear that he doesn't have to come back for a year. Last time he said to return in 6 months.

So we check in...

are sent down to the first floor to get a chest X ray...

 go back upstairs to the doctor's office...get a weight and length check...blood pressure taken...ekg..then we wait. The cardiologist said that everything looks and sounds great and we don't have to come back for a year!

We even got to see our old social worker and Will's primary nurse from the NICU. Overall, a good day. I forgot my camera so these were taken with my phone. It's the annual picture with the Circle of Peace Statue!

Deciding what he thinks

Trying to find a spot

 2010, age 3 months

2011, age 15 months

First words report: 

"O?" (for Hello?)

Ow!

Uh Oh!

Ma-ma (only when sick or tired so far)

For the record, he also says Da-da. Just not TO his Da-da yet.

*there's a million visits to the doctor

ER trip #4

Yes, that's an exaggeration. But I was wondering about this a few months ago. Every time we leave an appointment within the Vanderbilt system I'm given a print out of future appointments. Each time that sheet has 6-8 appointments listed. So I checked my calendar, looked up Will's info on the medical records system, and remembered what I could about the rest of them...and came up with the following totals between February and November of 2010:

14 Pediatrician
4 Cardiologist
1 Cardiac Surgeon
3 General Surgeon
3 Gastroenterologist
2 Urologist
4 Emergency Room
9 Home Health Nurse
5 Early Intervention Coordinator
10 Early Intervention Teacher
16 Speech Language Pathologist
10 Physical Therapist
1 NICU Follow Up Clinic
1 Ophthalmologist
1 Hearing Screening
1 Nutritionist
 = 85
+ a handful of other miscellaneous medical things (weight checks, etc)
= 92

If only there were some way to estimate the phone calls...

I just wanted to add those up in an attempt to try to measure what we have accomplished as a family. I don't have to wonder "Where did the time go?". It went to Vanderbilt! Luckily it is a nice place with good sweet tea. And sometimes they came to us so we didn't have to leave the house. Soon enough these visits will be replaced with visits to a school and a critique of the tea from that cafeteria.

But back to the near future, these upcoming appointments remind me of this:

February 2010, Will's discharge from the hospital

Next month we see the cardiologist again and will record year #2 of this photo. If he gets the all clear for annual appointments then we will won't be able to get the 3rd installment of the photos until February 2012!

*there's a good report

I just realized I haven't shared about Will's recent follow up with his cardiologist. Surgery was 4 months ago. When we saw this doctor a month after surgery we were expecting him to discontinue the Lasix prescription Will had been taking. This keeps fluid off the heart. Will still has this retracting or pulling around his rib cage when he breathes. It made sense before heart surgery but no one expected it to stick around. It doesn't look bad, it just looks like he is having to work hard to breathe. So instead of stopping the Lasix one month after surgery, the doctor wanted Will to keep taking it and come back to be seen in 3 months. I'm not entirely sure how the medicine is related. It's amazing the things I don't ask when in the midst of information overload.

The appointment went great! His EKG was fine and the doctor was pleased. No more Lasix. But the retracting is still there. I also asked the pediatrician about it. Both doctors have declared that it isn't a problem and Will's history lends itself to this kind of thing. He never had a serious lung diagnosis - I'm guessing they referred to his need for a ventilator in those early days as respiratory distress.

I'm not worried about it. As a matter of fact Chris and I haven't even really talked about it. I've just been thinking about it this morning and am wondering if it will always be there, and if so what it will look like. Will he one day sit with friends around a swimming pool, with his shirt off and the faint reminder of a heart surgery scar...and will it look like he's panting? I'm certain it will be unnoticeable by then but these are the things that go through our minds.

Will's sats were an awesome 99. That was pretty great. The doctor says there are 2 small residual holes in his heart. One between the top chambers and one between the lower. The lower one was left on purpose during surgery. They were closing a larger hole (the VSD or ventricle septal defect) and didn't want to get too close to the heart's electrical system and cause damage. I think he said the top one might close on its own. Even if they both stay the same, they are "trivial" in size. Awesome! So far I think the only thing besides Will's scar that will remind us of his CHD is that he can still turn a little blue when he gets cold. It happened once at the end of a bath but it's pretty preventable.

Speaking of baths, here is Will taking one with his killer whale.

 

Our cardiologist is pretty conservative and he wouldn't promise that Will won't need another heart surgery in 15 years or so. I think some of the other doctors would tell he us that he's in the clear. 

 Sights around the house this week:

I just unpacked this from our move in May.

Inside I found this. I completely forgot about this binder.
Its got all our NICU discharge instructions and lots of info on TOF.

I also don't need all those sheets of paper to describe what TOF actually is anymore. Here is the oversimplified, shortest version that is the easiest to tell: TOF is made up of 4 defects. The most important 2 to mention are that Will's heart had a hole between two chambers that allowed unoxgenated or blue blood to mix with oxgenated red blood. So the blood that was sent from his heart back out to his body didn't have enough oxygen in it. And the ventricle it had to go through was too small. So his heart had a hard time getting blood out and the blood didn't have enough oxygen in it anyway. Hence the term "Blue Baby". And since Will's case was fairly mild he wasn't very blue. How's that for short and simple? I can summarize pretty decently. :)

RECENTLY ADDED:

These are from the super useful site HeartBabyHome! I included their image of a normal heart as well as a heart with TOF. The 4 defects of TOF are in yellow in the lower picture. If nothing else about these pictures makes sense then at least take note of the colors...notice how the top picture has only bright blue and bright red as the background color of the atriums and ventricles. In the TOF picture, the lower chambers (or ventricles) have a purple color. This shows how those 2 different types of blood mix when there is a hole (called a VSD).

The 2 other parts of TOF:

1) when the muscle of the right ventricle becomes too thick (called hypertrophy). This is from working extra hard to get the blood out of the narrow valve.
2) when the aorta is in a slightly different spot. This one has always been more difficult for me to understand because it's hard to depict it in a picture. Here is what the NHLBI says about the overriding aorta in TOF - In a healthy heart, the aorta is attached to the left ventricle. In TOF, the aorta is between the left and right ventricles. This is relevant because it makes it easier for the oxygen-poor blood to get sent back out to the body.
 

*****

I read this blog from time to time. It's a young adult that does a really good job of uniting families affected by CHDs and educating people about what it's like to have one. I think I'm drawn to it because Will can't talk yet and hearing from someone older who has survived something similar is nice. I was really glad I came upon this info about scars. This is the part I want to remember, written by Lauren, the blog's author:

"let your children know that their scars are special badges of honor....Tell them it's ok to show off their scars and share their story. If they don't want to show their scars, let them know that's ok, but also let them know they shouldn't be ashamed of them either. It may take time for them to figure out how they want to deal with their scars, but let them know that whatever they want to do is ok."

I was also glad I read this line from a mom of two heart babies:

"As parents, we have tried to NEVER to comment if scars are showing, so as not to make them self-conscious, or to give them any reason to feel as if they should hide them." 

That is something I could see myself doing without realizing. 

 Here's the last pic from this week.

This is where the pacifiers have been hiding. Under the crib!

 

We have so many because they were thrown away at the hospital any time they fell on the floor. So the nurses told us to take them home and put them in the dishwasher if we wanted. That was really useful until they started to collect in this hiding place!

*there's a busy busy busy family

Typed on May 26th, photos added June 14th and July 20th.

We've moved! We are surprisingly settled in our new house already. Even though most of the furniture is in place, this week has been a mess of trying to find soap and sheets and "I think we left that at the old house". It's a happy kind of mess because we love being here. It's a great neighborhood and we cannot wait to start visiting all the restaurants nearby.

Mommy and Will saying goodbye to his first home!

 

And hello to the new one!

 

Looking into Will's room from the hall.

In the middle of this we've still been investigating Will's feeding difficulties. He was evaluated by a speech language pathologist and the news wasn't what I wanted to hear. Based on what she saw, he has an oral aversion and won't be able to get enough nutrition by mouth for awhile. So we're stuck with the tube. I may have mentioned long ago that since he was in the NICU that a G tube is an option for him. I don't know much about them yet but will probably be able to write chapters about them in a few months. Getting a G tube requires surgery which we logically have wanted to avoid. Also the cardiologist requested we wait until after the OHS because the sites are so close to each other there is an increased risk of infection.

Since initially we expected him to have his current NG tube only a couple of weeks, we didn't expect to be at this point having to make this decision. Everyone wanted to wait and see what happened after surgery - we are under the impression that lots of times babies go home with an NG tube but pick up eating quickly after repair. After all, they are feeling better! But unfortunately during all this waiting Will has started to associate sucking and swallowing with unpleasant things. It is baffling to us that he will eat normally once and then not do so again for days. He can nurse for 20 minutes, but when it's time for him to be hungry again he doesn't want to nurse again. Or take a bottle. Or sometimes even let you touch a syringe to the outside of his mouth. So we're going to be doing some feeding therapy and in the meantime work on getting a G tube. Even though feeding him, especially away from home, will continue to be a big pain I feel certain we will be relieved to have the NG tube out of his nose and off his face. It will be a beautiful sight to just see his face the way we have wanted to see it all this time. There is much more to say about oral aversion and I'm sure I will be writing about it for weeks to come. Often I plan to give better descriptions of things here on Will's blog and I end up forgetting or getting to busy to go back and do so. This should be consuming us for awhile though so I'm sure the topic will be revisited.

 This is what I think of bottles! Yuk!

 Thanks to Claire and Morgan for sharing one of their precious high chairs with Will!

On the 25th we saw the cardiologist. First Will got an X ray and an EKG (I wish I could take pictures of the EKG- it's kind of neat. They use these little sticky things on his chest and clip wires to them...like a combination of tiny medical post-it notes and about ten baby jumper cables. He gets upset when they pull the stickers off - it probably hurts. Maybe if he keeps getting them when he's older he can explain it to us.). The doctor said that each year our visit will alternate having an echo one year and a heart X ray the next.

We both wear a bracelet every time he gets an X ray.

Will's incision looks really good despite us being a little freaked out about his stitches. At each end of the incision site there have been these tiny scabs. Except that we realized the other day that the scabs are actually thread. The bottom has a loop of white thread and the top has some white thread and a short piece of clear thread that is sticking straight out. We didn't know we would ever see those so it took us by surprise. The nurse said sometimes they just work their way out. The scar still looks good though and as long as there is no sign of infection we won't be worried. It's just a little weird. The excellent way they had him all sealed up helped us not have to think about what it looked like underneath.

I learned something new at this appointment. We've been hearing all along that he will need to take antibiotics before every visit to the dentist. This is to prevent getting an infection from the dental procedures that could affect his heart and cause damage. When I asked about it today the doctor said that won't apply to Will! He said that the guidelines have changed and it is only true for about 6 months after surgery. Will won't be seeing a dentist any time in the next 6 months! I know it's probably not a big deal to most people to hear something minor like this. But since so many things about taking care of Will are so complicated...each week without a trip to a doctor and each time we can eliminate a pill makes it seem like a small weight has been lifted from our troubles.

 More to come!

*there's a date

Will's surgery date is set for April 28th!

The cardiologist is pleased with his growth (finally!). He weighs 10 lbs 9 oz!

We also saw a GI doctor this week to see if we can get Will's reflux under control. His medication has been changed and a nutritionist will be helping us with the feeding plan. Will currently takes 78 MLs every 3 hours of breastmilk fortified to 26 calories with a formula called Neosure. We try to feed him with a bottle and whatever he doesn't finish goes through his tube. Although this has helped him put on weight, as I've mentioned before Will doesn't get hungry. When we left the NICU we thought that he would only need the tube for awhile and eventually he would eat everything on his own. But he isn't taking more by mouth like everyone hoped. Maybe something can be modified to give him a chance to eat a little more normally soon. 

When one of us is away from home, the other sends a cellphone picture so we can see what Will is doing. This is the one I sent Chris on Friday:

And here is one he sent me today:

He looked so grown up in his outfit and little shoes!

*there's his first appointment

with the cardiologist! We had (well at least I had) been looking forward to it. First he was weighed, measured, had blood pressure taken and his oxygen saturation was checked. The topic of oxygen saturation is a blog post in itself, but today it started out at 78. 78?? That was odd. Good O2 sat is 100. In the 90s is also acceptable. My understanding is that everyone will have drops in sats at different times of the day and that is normal. The doctors are okay with it when Will's sats are in the 80s, which happens at times. If you've ever had one of those clamps on your finger with the red light on it, that was a pulse oximeter measuring your O2 sat. [for the record, we are almost as tired of the word 'sats' as we are the word 'spells'] For babies the pulse oximeter is a small light attached to something that resembles a little Ace bandage that usually gets wrapped around the foot. When Will is in the hospital it is monitored constantly and shows up as one of the numbers on the monitor that you've seen pictures of in the past.

When the doctor came in the room he checked the O2 sat again and it got as high as 90. Now that made more sense. We didn't get a date scheduled for surgery yet. This will depend on what his O2 sat is at the next appointment, and possibly the next one. If we see a trend of it being in the 70s then it will tell us that Will needs surgery a little sooner. If it stays high then we can wait longer - enough for him to gain 2, 3, maybe 4 more pounds. Weight today was 9 lbs, 2 oz. They say the heart is about the size of the person's fist. I'll have to get a picture of Will's fist at some point. As much as I want the surgery over with, if I were a surgeon I would want someone to do me the favor of letting the heart needing surgery to grow until it's as large as possible!

These 2 pics were taken with my phone. The quality isn't good but the content is worth it.

 Sleeping and....

Surfing?

 

Smiling!

Coming soon....a curl is born.